A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)

Ok, I know I really wanted to do Tricia's 31 for 21 Getting it Down posting extravaganza, (but failed miserably) but I wasn't, you know, into my blog yet, and I feel that I have really come around and out of my shell for this month. So, here it goes, I am going to take the monthly themes as advise and see if I can't blog every day next month. It is December, how can I not have things to write about, right?

I admit, sometimes I need some inspiration for blog posts (don't we all). So I thought I would post 21 things about Penny that don't have to do with Down syndrome. I tag Mel and Dillon and anyone else can consider themselves tagged.

1. She still has cradle cap and she is 18 months old. When will she get rid of this??2. Penny loves to play peek-a-boo.3. She loves it when she gets attention from her older brother Nathaniel, but. . .4. Does not like it when he tries to pick her up or hold her, she prefers his attention while she is in mommy or daddy's arms.5. Penny will eat anything if it is in tomato sauce. Including vegetables!6. She likes to hit us in the face. Scott and I are trying to get her to stop, but she likes to see us in pain I guess.7. She loves music and likes to dance along to along.8. Penny thinks it is funny when she throws food on the floor. It is her way to defy us or something.9. She likes going "bye-bye in the car."10. Her feet stink all the time and we have no idea why.11. She likes to share her food and drink by putting things to my mouth or her daddy's mouth - even when the food is soggy with her saliva.12. She can say "dog!" when she sees one in a book or on TV; in person, she is afraid of them.13. Penny has been pretty much sleeping through the night since she was 3 months old (with a few exceptions when she is sick or after her 2ND surgery), but. . .14. She wakes up a 6 am and we cannot get her to shift her schedule even when we put her to bet later and later.15. Penny loves SpongebobSquarepants, who doesn't???16. She hates it when I rub her hair, she is probably afraid I am going to pick at her cradle cap or something! lol.17. Penny likes to play with tea set and then put the cups and such back in her container.18. She LOVES her daddy and he will win every time.19. She has a babysitter that comes over 3 days a week and her grandmother watches Penny 1 day a week.20. Her favorite word is "Dada!"21. Her mommy and daddy think she is the cutest little girl in the world!

Saturday, November 29, 2008

Dear Penny, today, you are 18 months old. I look at you sitting on the living room floor sick and miserable, and I wonder when you will be feeling better. I love you and it breaks my heart that you are so under the weather. I am thankful that you are interested in drinking some apple juice this morning. Last night you wanted nothing to do with anything that had to go into your mouth.

You have changed so much in the last 6 months, and 18 months seems such a lifetime ago for me.

Let's see, since May you have begun to put yourself in a sitting position on your own. I was so happy when you learned that trick. You seem to cruise all over the place, so I like to set up the chairs around the room for you. Although I bet you will not be in the mood for it this weekend. *update, I just had to take a break from this post because you wanted me to help you walk from the coffee table to the dining table.* I guess you are feeling a little bit better today.

You say a couple of worlds like Dada and dog. And Sara the speech therapist seems to believe you say "all done" and "what's this." It does sound like you could be saying these things, but when are you going to say "mama?!" I would think that is more important then these other worlds. That's OK though, in time, you will say mama.

You started to crawl on your hands and knees, abandoning the military crawl you were so good at. Sometimes you even move on you hands and feet! Daddy said he saw you go into a standing position from the inverted "V," but I haven't seen it yet. Someday in the near future you will be walking, but I can wait. You just take your time for the walking piece. Yvette, your physical therapist, is very proud of the progress you have made and I feel the same way!!

You are no longer the fragile baby from last year, you are a big baby that makes her opinions known. It was such a quick change from baby to toddler, even though you are not toddling yet. You are very vocal and quick to let us know if we are doing something you don't like/want, like going to bed, or changing your diaper.

Bath time is probably one of your favorite times of because you love to play and splash the water so much. You also like to play with your doll house and tea set. For some reason, you love to hit me on the belly s hard as possible and wait for my painful reaction. I don't know why this is so funny for you, you must like to see me in pain or something.

Feeding time has gotten more interesting. You really try to so hard to use your fork even though the food just won't stay there. But you sure get an A for effort. You have also been drinking a lot out of your straw-cups. Good for you!

I know your first 18 months of life brought a few painful experiences and a couple of close calls, but I thank God we were able to keep you alive through technology so that we could get to know you and love you.

I can't wait to see what kind of person you will turn out to be. I love you!!

Friday, November 28, 2008

I took her to the doctor Wed afternoon because of a fever on that day and she was diagnosed with walking pneumonia. She has been on antibiotics since Wednesday evening so I hope she will start to feel better soon.

And not so I sound like a horrible mother, I did ask the Dr. if it would be ok to take her to OSV on Thanksgiving, because if he said no, I would have stayed home for sure. He said that the fresh air might do her good and that it really is up to how miserable she is.

Thursday, November 27, 2008

I hope everyone had a fabulous Thanksgiving. Nathaniel told me he is thankful for God, because if it wasn't for God, none of us would exist! lol.

We were able to make it to Old Sturbride Village for a Thanksgiving banquet. We got there early since we wanted to look around the living museum, but Penny was just so miserable. I felt so bad but we paid a lot for these dinner tickets so we tried it out and Penny made it through dinner ok with the help of some Tylenol. Then I took Penny back to the car so Scott and Nathaniel could enjoy another hour or so of the museum and she slept the entire hour and a half as well as the 45 minute ride back home. Then she slept until 5 or 6 when we realized that she was burning up. Scott took her temp and it was 104.1!!! I called the pediatrician's office first and left a message with the answering service to make sure that a 104 temp doesn't mean she should go the hospital. 40 minutes and a 2nd phone call to the answering service to make sure I had given them the right number for the doctor to call, and we just gave her more Tylenol. By the time we did get a call back at about 8 pm, she was feeling well enough to have dinner and terrorize our living room as usual. Since she was playing the dr. wasn't too concerned.

But we did have a lovely dinner. There was ham, turkey, apricot glazed carrots, broccoli and cheese Au gratin, mashed potatoes, a crudites table with home made pounded cheese, mac and cheese, and homemade cranberry sauce that was out of this world. Not to mention butternut squash bisque and salad fixin's. The desert table was wonderful too. There was this Indian bread pudding that was delicious. Their coffee was so wonderful too that I swear I thought there was alcohol in it. lol. I just wish Penny could have enjoyed it more.

Well, good night!!! I will post pix this weekend when I have more time I am sure.

Tuesday, November 25, 2008

I can't believe Thanksgiving is almost here. This has been some kind of crazy fast year. I am thankful for all the friends and family that I have that continue to support me and be there for me. Thanks guys!

Well, this morning, she woke up alarmed about at 5 am. Not only was she breathing funny due to the stidor and the croup, but she got her self so upset she would go into these fits where she made herself really stiff and with her clenched hands she would rub and hit herself all over her ear-temple region on the head. This was accompanied by an even more shrill scream. Her poor throat must have been on fire. She wouldn't take liquids and there was nothing we could do to calm her down. She didn't seem to be turning blue and because she was crying loudly we knew she was breathing somewhat, but no parent wants to see their child in so much pain. At 5:40, yes, forty minutes, I was starting to think we should take her to the ED because I was so concerned that she was not going to be able to calm herself and breathe right. Instead I called the pediatrician and was told by the answering service that I would be getting a call back from a nurse first. Now, I have a lot of respect for nurses, but if I wanted to talk to a nurse I could have called my insurance company's 24-hour helpline. I told the answering service about her heart defect and that I would really rather have the doctor call me, but she said that this is how it is done now. Does this seem wrong to anyone else or am I over reacting? I don't know. The nurse called back within 5 minutes and suggested we run the shower. The steam did help and after the 15 minutes or so Penny seemed happier. She stopped crying and even smiled a bit when I played our "Peeyew stinkie feet!" game. We were called back by the nurse and she listened to Penny's breathing over the phone to tell us that we could bring her in during office hours if we wanted to. (Our pediatrician has 9am to 12 pm hours on Saturday.) I decided not to because, they aren't going to be able to do anything for her. Croup just has to run its course. I just feel bad because it is clear she isn't moving that phlemgh that she is trying to hard to get out.

Does anyone else have any suggestions out there? She has been playing fine since we got back up at 8am (yes! she went back to sleep thank God), and she ate a pretty hefty lunch, but I am worried for tomorrow morning.

One of my co-workers brought in a CD for me and Penny for Christmas. I have never heard of this before but it is "God Doesn't Make Mistakes." I of course had to listen to it at work and now I can't stop crying! I didn't have a prenatal diagnosis, but my feelings are not far off. You can visit their website to purchase a copy for yourself here.

Here are the lyrics:

Lying in the dark, staring at the ultrasound.The doctor shakes his head, says "I'm sorry but this baby has Down syndrome.And I know it's hard to decide,But she's so fragile that she'll probably die,And it might be a blessing if she did"Little did he know we're all the more blessed 'cause she lived.

Chorus:And no, she's never gonna look like the other kidsAnd she may not learn to talk like the other ones didAnd I guess she's always gonna walk just a little behind, But I don't mind.'Cause she lives her whole life without one trace of guileAnd she lights up the world with that crooked little smileand she loves you with a love so pure it just makes you heart break.And I'd like to tell that doctor,God Doesn't Make Mistakes.

Sittin' in the park, watchin' all the children play.My daugher walks up, they get quiet and little afraid.But pretty soon the smiles come over their faceAnd they slow their game down just a paceAnd I watch as a spirit of kindness aboundsAnd thank God for that girl who showed me what life's really about.

(Chorus)

. . . And she helped me to discoverGod Doesn't Make Mistakes

They said something went wrongBut I think something went rightAnd I'll fight for my baby with all of my might.'Cause I love her with a love so pure it just makes my heart breakAnd I want to tell the world,GOD DOESN'T MAKE MISTAKES

written by Steve Moser

And of course there is a cute picture of a beautiful girl with Down syndrome on the cover. I love this gift!!!

Thursday, November 20, 2008

I know, this blog is supposed to be about Penny. But hey, I am just as interesting and you know Penny is just doing so well that I don't have that much to talk about when it comes to her.

Actually, I do have one update about her that I can share. Scott is finally taking her to get her first blood draw for thyroid testing. I know, we should be on test #3 by now. Apparently we are really bad parents. (shame) If you notice on my link list, there is a comprehensive listing of things to have routinely checked for on your child with Down syndrome and I have ignored this.

Anyway, back to me. Last night I stopped by the Boy Scouts of America store to finally purchase my uniform shirt and all the related accessories. Nathaniel is just so excited about this and he cannot tell me enough how much he loves me when we are doing scouting things together so I know this is a great thing to do with him. I might even go all the way with him in cub scouting. I mean, what kind of message would that send if I quit? And it is only one hour a week, right? lol. When I showed him all the patches I had to sew to my shirt, Nathaniel said to me, "Mommy, it is almost Friday. You better hurry up and sew these on!" And wouldn't you know that when I called to check on him before he went to school, he asked me if I started sewing yet. I admit I was up pretty late working on this, and he was already asleep, so his concern was really sweet.

I am really having a good time with this Cub Scout stuff and by the time Nathaniel crosses over to Boy Scouts if he chooses, it will be right in time for Penny to be in 1st grade (hopefully) and she will be ready for Girl Scouts. I have already planned my out!

Wednesday, November 19, 2008

1. Who was your FIRST prom date?Tato. He was the premier skate boarder in Manchester and I didn't have a date to my Junior Prom so I asked him to go with me even though he was 21 years old!

2. Do you still talk to your FIRST love? Through myspace occasionally.

3. What was your FIRST alcoholic drink?probably beer

4. What was your FIRST job?Babysitting, same as Rene, I even took a Red Cross class through the Girl Scouts to certify me.

5. What was your FIRST car?If you don't count the 1984 Plymouth minivan that was a 5-speed that my parents let me drive when I got my license. . the 1st car I purchased, and that was in my name was my 1992 Dodge Shadow (also a 5-speed).

6. Who was the FIRST person to text you today? I rarely get texted. It I didn't get any today.

7. Who is the FIRST person you thought of this morning? Scott, I couldn't tell if he was still in the bed with me. Ever since we got this king size bed I feel lost!!! :)

8. Who was your FIRST grade teacher? Mrs. Bono.

9. Where did you go on your FIRST ride on an airplane? I was a few months old and I took a trip to San Francisco to visit my father's parents with my father and my mother. I don't remember it.

10. Who was your FIRST best friend and are you still friends with them? Stephanie, but we don't connect anymore. There wasn't a fallout or anything, we just don't have a lot of common interests anymore.

11. What was your FIRST sport played? Me?? Sports? Surely you jest. I did join the Club Team Women's Ice Hockey Team at UConn. I didn't get to play one game because I hurt myself right at the start of the winter semester.

12. Where was your FIRST sleep over? Stephanie's house

13. Who was the FIRST person you talked to today? Penelope of course. I went to check on her and change her diaper before Nathaniel and Scott woke up and before I left for work.

14. Whose wedding were you in the FIRST time? My Aunt Bonnie? I was a flower girl.

15. What was the FIRST thing you did this morning? Jumped in the shower.

16. What was the FIRST concert you ever went to?Ozzie Osborne when I was a Junior in high school. The best part was, when I got there, I found out that Korn was opening! I was way into Korn, but didn't care too much about Ozzie.

17. FIRST tattoo or piercing?My ears when I was 7 and then I got the one tattoo when I was 18 and a half.

18. FIRST foreign country you went to? Portugal with my Catholic Youth Group when I was 15. It was a really great time.

19. What was your FIRST run in with the law? Seriously, it must have been was I was 2 or 3 and I decided I would go out and ride my tricycle around the block in my birthday suite while my mom was taking a nap with my infant brother. Two officers saw me and escorted me back to my home. Good thing I knew where I lived!

20. When was your FIRST detention? I honestly don't think I ever had a detention. Maybe one in Catholic school when I was 10 or 11 when I forgot my homework once. I never forgot to do my homework again!

21. What was the FIRST state you lived in? Connecticut, I have only ever lived here.

22. Who was the FIRST person to break your heart? Scott

23. Who was your FIRST roommate? What's her name from the Ukraine at UConn. Vicki?

24. Where did you go on your FIRST limo ride? Out for some games of pool.

Monday, November 17, 2008

I know I haven't put her on my blogroll yet, but the fact is, I have been following Michelle and Kayla since about the time she announced she was pregnant with Lucas. I am so happy that Kayla made it to the finalists because I really think she is so gorgeous. Please go and vote for her on this Prego contest so that Michelle will have some spending money while her husband goes back on duty.

For Penny! She is just so close to walking. She is so happy with herself. I try to set the dining chairs all over the living room in different compositions so she can cruise herself to where ever she wants to go. :)

Tomorrow morning I get to help chaperon for Nathaniel's 1st grade field trip, wish me luck. I love hanging out with a bunch of crazy 6 year olds. Hey, that must be why I am into Scouting!Speaking of scouting, I spent 8 house at a Cub Scout Pow-Wow on Saturday. I learned so much and I am so excited now to be a Tiger Cub Scout leader for those boys. I can't wait to apply what I learned!

Joey is going in for surgery today for his malrotated bowels. Please, everyone, pray for an uneventful and quick surgery and that he has an easy recovery. He is such a cute little man and we want him to get to his good old self as soon as he can!

Tuesday, November 11, 2008

What do you do when your 18 month old is up 3 hours past her bed time and she is not hungry, or feverish but she (or he, this is hypothetical right?) just whines and cries with no end in the crib and will not settle in if you try to lay down in the big bed? This same 18 month old is happy to play though if you take her (or him) out of the crib!

Sunday, November 9, 2008

We went to Target today to get our Christmas pictures done. I think I am really happy about how they turned out, it is just that there was so much craziness going on and it all happened so fast. I might have to go back to get more of Penny. She was not in a good mode. Here is the dress she was wearing. Nathaniel was so well behaved that he won his prize at the end. An Indiana Jones Legos set (the cheapest one they have there).

Oh, and if you are surfing and have nothing better to do, please go see some pictures on Flickr of me having a great time partying with some friends. I got to go the Burlington, VT sans children and husband a couple of weekends ago and I can't remember when I had such a good time. Here is a picture I grabbed of my good friend Irene before I had to bring her back to the airport.

Saturday, November 8, 2008

I was inspired to write about the first time I had to turn into a bitch for Penny's sake, by Adelynn's mommy's post. When Penelope was a month old to the day, her wound incision appeared to be infected, so we went to the cardiologist office (it happens to be in the children's hospital here) and she was put on PO antibiotics. At 3 am the next day, I could tell the infection was getting worse so we brought he to the ER at the children's hospital for a course of IV meds. She hadn't gotten a fever at this point so we knew that everything was going to be alright.

Penny's first IV was put in at the ER and to my knowledge, that 1st dose at about 6 am went in fine. With her noon dose, it was clear that the IV had infiltrated so the IV had to be removed. The doctors didn't feel they needed to do anything until her next dose was due so around 4:30 this TOTALLY HOT SWEDISHresident, Dr. Thor Thorenson (I am not making that name up, I swear to God), came in to tell me that he is really good with babies. I told him that she is a hard stick and could we just call the NICU nurses? He replied that they were too busy. So, 35 minutes later I could still hear her screams down the hall since I had to leave to room at some point. I came running back in to stop the evil torture, but learned that Dr. Thor had ceased as well. I asked him what the plan was. Even though I had been up for 14 hours at this point and it was only 5pm, I knew that this was necessary so my concerns were more that I wanted her to have her medicine and not so much her comfort. He told me that he wanted me to try to feed her to allow the veins to plump up more and then he would try again. I asked him what other options we had in case he couldn't get the IV in again. He suggested a vein in her scalp, but that usually doesn't work for babies because they shake their head a lot and it could push out the IV. I looked at him and told him that doesn't sound like much of an option then. So he left to give Penny time to calm down for round 2.

As soon as he left the room I tried to think of how I could take matters into my own hands. So I picked up the room phone and I CALLED THE CARDIOLOGISTS OFFICE'S NUMBER. Never mind that it was 3 floors below me. I spoke with Dr. Iyer, and I told him that I wasn't happy with the level of care I was getting. I told him that my daughter was 4 weeks old and that what I wanted was a NICU nurse to come over to do this. He then said the words any mother would have been happy to hear: "I will absolutely do that for you." He also asked why this wasn't already done and I told him that Dr. Thor advised they were too busy over there. I don't think he liked that answer.

About ten minutes later, Dr. Thor then walked in to discuss "The plan" again. I finally interrupted him to tell him that I used the phone to call Dr. Iyer and a NICU nurse was on the way over to do {what he couldn't do.} This was the best reaction in the history of reactions that I have seen in real life: his jaw dropped open and he stared at me for a moment to think about what he was going to say next. I mean, how dare someone call a doctor on a phone while you are in a hospital, it sounds crazy right? One minute later, my favorite NICU nurse Rhonda, showed up with an APRN and they got to work. Within 5 minutes and with no tears the IV was in!!! God those nurses are good!!! I am sure Penny appreciated the change in venue too.

Friday, November 7, 2008

I guess there is a cover out there of John Lennon's "Working Class Hero" by Green Day. You may have heard it. The beginning of the song really sticks with me on this version. I am not sure if the lyrics are the same or not.

AS SOON AS YOU'RE BORN THEY MAKE YOU FEEL SMALL BY GIVING YOU NO TIME INSTEAD OF IT ALL'TIL THE PAIN IS SO BIG YOU FEEL NOTHING AT ALL

Penny sure is getting ready to walk. I know I could be saying this for the next 6 months, but what can I say - I am proud of her! She lets go of the coffee table and stands for almost a minute before she plops on her butt. I can't wait until I can stop carrying her heavy body everywhere.

Wednesday, November 5, 2008

WoWsers!! Penelope tipped the scales at 25 lbs and .4 oz. That is of course with all her clothes and her leather shoes, not to mention the full diaper. The visit went well enough. I confirmed something I found online that Dr. Mello moved to New Orleans. Katie, his PA, now works solely in the P.I.C.U. I asked Penny's cardiologist who will do surgeries now and the answer is that they no longer do pediatric cardiac surgeries at CCMC. If a family needs heart surgery on their child, they either go to Yale or to Boston Children's Hospital. How sad, how very, very sad. It was such a relief knowing that my child was having surgery so close to home. But I guess you can't have it all. Some states don't have facilities like this such as VT, and they are hoping this is temporary, until they find someone else. . . .

But, now on to Penny's visit: Her VSD patch looks great, and the homograph conduit looks good with only trivial leakage. I was informed that you are never going to get a conduit that doesn't have some leakage. I asked about the muscle tissue growing on the right ventricle (Right ventricular hypertrophy), I was told that for now the size of her right ventricle looks good. As the conduit begins to fail, the heart will try to compensate and that side of the heart will enlarge some more, but we should be a long way off for that. Her EKG was normal. The only cause for concern was the size of her right pulmonary artery. You may recall in a post from last May at her last visit, my concerns laid with her left p.a. and how very happy we were that it was not as stenotic as it may have appeared during a cardiac catheter procedure in Nov 2007. Well, this time, it is the rpa that seems to have us guessing. It isn't a matter of it looking bad, it is more of a matter of her not being able to get a great look at the rpa. There may be scar tissue blocking the entrance, or it may be a shadow. Hard to tell in the echo cardiogram. So, Dr. Salazar recommends an MRI just to be safe. I am sure I was worried over nothing in the days leading to her appointment today, but now I have to worry some more until we get a better picture on the MRI. Worst case, they do another catheter to balloon up the stenoticrpa, WHICH IS NOT THAT BAD but still, I have to wonder. . . and wait!

The orginal purpose for me to post was to announce that Penelope is having her cardiologist check up today at 1pm at CCMC. I know she is doing well. She is a healthy 23 lbs, she is very active and she looks pink! But of course I am going to worry. I will post more and advise on how the visit went. We are hoping to be surgery free for the next 5 years at least!!!!!

Ok, so I am upset the Obama is the next president of this great country. Really, really, upset, but at least I know I went and voted yesterday to show my support for McCain in this Blue state.

I am more upset over the recent additional layoffs in my office yesterday. November 4, 2008 will not be remembered as a great day day in my life.

However, I did have some fun at Joey's place -well, it is really Jess and Pat's, but they let him stay there :). You can head over there and see some photos of the kids playing. Even Nathaniel was getting into it. I think we need one of those blue tube things in our home to play in.

We really miss Dillon and Melissa, my life has been so hectic I cannot say when I will be able to get together with them again! Especially with all the boy scout stuff in there. Maybe Sunday after our portrait session at Target. Maybe. . . .

Also, I need to welcome Rainer into this world. He was born on Halloween and is a wonderful addition to the family that was 3 and now 4 : Tricia, Alex, and Georgia!

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.